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colorectal cancer/colostomy

jenniferllewis
Posts: 5
Joined: Aug 2005

My father just found out he has colorectal cancer. He is going to start radiation/chemo next week for 5 weeks. They are trying to shrink the tumor, if that does not work, then he will have the surgery and the colostomy. I would like to get in touch with someone that has a colostomy and how it effects your daily life. He does not think he can handle it. I know he wants to fight this, so he will have one if he has to, but how can I reassure him, that its not the end of the world. Thank you, JL

taraHK
Posts: 1961
Joined: Aug 2003

Hi Jennifer,
So sorry to hear your father's news. But he is not alone! I was diagnosed with rectal cancer about 2.5 years ago (age 44). My treatment was similar to your dad's: I had chemoradiation for 5-6 weeks. In my case, although I had some response to the radiation, I still had to have surgery, and my surgery resulted in a permanent colostomy. (My tumour was very low). I can absolutely tell your dad that having a permanent colostomy is not the end of the world. It is not something any of us would wish for, and it is a big adjustment. But, I can honestly say that it is a very minor aspect of my life now. I can wear the same clothes as before (no bikinis! but I was past that anyway), can do all sports I did (including swimming), sex is no problem (pardon me mentioning this, but it can be a real concern to potential ostomates), I work full-time, socialize....Nobody knows I have a colostomy unless I tell them. I would be happy to address any concerns your father has, on this message board or he can email me. The important thing is that he beats the cancer! Best wishes to you and to your dad.
Tara

Marylin
Posts: 5
Joined: Sep 2005

Tara, That was a wonderful response to Jennifer's post. I'm sure that what you said will be a big relief to both her and her father. I'm so happy to hear that you're doing so well and have such a wonderful attitude. You're a true inspiration.

Marilyn

jenniferllewis
Posts: 5
Joined: Aug 2005

Thanks Tara. My dad does not have access to email, but I printed out all of the responses from everyone. You all have been so great. I appreciate you taking the time to encourage me to encourage my dad. Anything, you can tell me would be great about it. That is my thought about it, if it were me, but everyone is different. Thanks again.
JL

Marylin
Posts: 5
Joined: Sep 2005

Hi, JL...First of all, let me say how sorry I am to hear about your father. This is something that is very difficult for both of you.

If your father could just take this one step at a time, he might find that he's much better equipped to handle whatever lies ahead than he thinks he is. It's totally overwhelming to learn that you have cancer and then to hear that you might require a colonoscopy --- all in the same breath.

I think he'll find that with the latest medical advances we have to deal with these kinds of things, it won't be nearly as bad as he thinks should he have to have the colonoscopy.

I have not had a colonoscopy. However, I did have about 80% of my small intestine removed as a result of cancer. Yes, there were adjustments to make, and I was very discouraged at times with the digestive problems I had to deal with. However, the body does a wonderful job of adapting, and if we try to do the same, emotionally, we can become whole again and live an "almost" normal life.

Your father is probably thinking about how embarrasing this whole thing he's going through will be for him. If there is any way you, and other family members, can get it through to him that you will not think any less of him should he have to have the colonoscopy. He needs to know that you won't find it disgusting or embarrasing. I believe, just from my own experience, that one of the best things you can do for him is to make him feel that, to you, he will always be the same wonderful person he was before this happened. It's important for him to know that his loved ones will not think less of him because of this.

JL, please don't worry about not having all the answers and solutions for your dad's problem. Just be there for him, let him know you love him, and listen to what he has to say.

Both of you WILL get through this.
Marilyn

cal79
Posts: 57
Joined: May 2005

Hi Jennifer,

I was diagnosed with rectal cancer earlier this year, and had to have a temporary ileostomy (which has gone on a lot longer than it was supposed to..). I know this is slightly different, but the concept is the same! The whole thing is not nearly as awful as I had initially anticipated (I was 25 and had just got married), so I assumed that the whole ordeal was going to be dreadful. I envisaged bags falling off, awful smells emanating from the bag, everyone knowing I had a "bag", loud noises at inopportune moments... you get the picture.

The reality is that none of this happened. I have never had a bag fall off, it only stinks when you empty / change the bag (but who's turd doesn't stink I ask you??), and I have only ever had one major mishap, which involved copious amounts of wine...

I was even thankful for my bag last week, as I had a bit of gastro, and had I been bagless I would have had to spend all day on the loo. Instead, I went to the pub.

Having a major change like this one is quite a shock to the system, but it is really not bad at all. I thought I would never be able to cope with the stoma, but as it turns out I don't mind it at all, and I actually find the scar more unflattering than the bag!

Hope your dad goes well, feel free to email if you have any questions.

Cal :)

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

I am so sorry that your dad has to go through all this. I was 46 when diagnosed with rectal cancer in 3/03. I had chemo/rad followed by surgery with a temporary ileostomy. I tolerated the ostomy OK, but of course wanted to get it reversed ASAP. Eight weeks after my surgery I had my stoma reversed. This was followed by more chemo. I receved only 4 out of 12 treatments for my stage 3 CA. I ended up in the hospital due to severe diarrhea and chemo was stopped. I continued with multiple BM's, diarrhea,incontinence, getting up many times during the night to rush to the BR. I cried daily because my bottom was so sore. I tried everything and saw many different doctors. Well, 18 months later, I had surgery for a colostomy. I have my life back. It's not so bad and I can go any where. While I wouldn't have picked any of this, I remain cancer free.

I only told a few people. Because I am a nurse, more people know than I would like, but oh well. I didn't even tell my sister, she thinks I had surgery for my adhesions.

And I did all of the above while working full time. I worked through all my treatments but did take time off after the surgeries. I couldn't have done it without my wonderful husband and 3 great kids. My husband wanted me to have the surgery to get on with my life.

If you have any other questions, feel free to ask.

Maureen

alihamilton's picture
alihamilton
Posts: 348
Joined: Jan 2004

I just had to comment on the above answers as I think it shows how important and wonderful this forum is! The love and support that people give to others is immeasurable and makes all the difference to particularly those recently diagnosed.

My husband was told he would definitely need a colostomy and we were in such a daze anyway having received the dx that we just listened to all the advice and encouragement given by the doctors. However, it turned out he did not need one. It will take a period of adjustment but the most important thing is that your father gets rid of the cancer. I do wish him and you the best and keep us posted....we are happy to help with any questions you may have.

Ali

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Jennifer,

I was 49 and an ex athlete and yes my bod and looking in the mirror was "important to me" but after my surgery and subsequent colostomy bag, I do not remember noticing the bag. Like Cal, I noticed the scar more and while on chemo, I found the bag to be very manageble compared to not having one. The bouts of constipation/diarrhea were much easier to deal with without the ole sore bootie and hemorroidal pains. Passing gas is not offensive to anyone this way, other then the bag filling up like a balloon.

I personally have found that it has helped me with my new diet. I now know pretty quickly which foods and products bother my stomach.

If I could recommend one thing, that would be for him to take care of himself, instead of depending on someone else to clean and change the bag. I think depending on others for it leads to the feelings of never being healthy again. My nurses were great and my 2nd bag was changed by me as has been every one since. I tend to think that was me facing the reality of this disease. It does change your life and I think it is God's way of telling us that change is needed. How we each deal with it is within our control and feeling in control of my situation was important to me.

There are so many different brands and kinds of bags now and US insurance covers most of the expenses. Mine are delivered to my house and no one knows unless I tell them. I do wear clothes a little differently but what the heck does that mean. I am alive and happy to be here.

I now am facing a very interesting dilemna, my bag can be reversed. How much of that is vanity versus health is my current challenge.

I've rambled too long but in the grand scheme of things, the bag is not that bad!!!!!!! Tell your Dad to try to ignore that part of it and just work on fighting the ******* cells and then deal with the bag later.

Lisa P.

VonnieKai
Posts: 30
Joined: Nov 2003

When my husband found he had rectal cancer, I insisted he do everything to avoid having a permanent colostomy because I thought he couldn't handle the change in his lifestyle. We found a great surgeon who was able to perform sphincter saving methods and my husband doesn't have a colostomy, but he also doesn't have very good bowel control now that it's four years post surgery. Loss of bowel control was one possible outcome of the recovery that wasn't fully disclosed, or if it was, I don't remember being told that! My husband wishes now he would have had the colostomy, especially since he's still taking chemo and having diarrhea is very messy and embarrassing for him. When he had the temporary ileostomy, I was surprised that it was not difficult to help him care for it. I agree with Lisa that it's better not to depend upon a caregiver to maintenance the stoma and the bags - primarily because so many health care workers are not at all competent at stoma care. I hope your Dad discusses his worries with a good ET nurse and you pass along all the comments from these fine folks. I wish I had found this board before my husband's surgery.
Vonnie

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hi Jen and welcome to our family. I was told that a colostomy might be needed during surgery but I was lucky to not need one.Nonetheless I wanted to reply to you to welcome you here and also give you some good news. A friend of mine here in oz had rectal cancer and has a colostomy. As you can see from my other friends here it is a common outcome. The really inspirational thing about my friend here in oz is that he had cancer 18 years ago! Back then he did not even do chemo! My friend continued to work until he retired recently and he openly states that his colostomy does not pose any real problems. Just some changes in lifestyle..nothing too radical. He still is monitored for any re-ocurrance but his attitude is unbelievable..a true ozzie battler who has fought and won the war.
I hope this along with our other friends replies here puts your mind at ease a little.
cheers, kanga n Jen

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Jennifer,

Welcome to our wonderful site. I hope your father's cancer responds to radiation and chemo, but if not, I hope you have been reassured that having a colostomy will be something he can manage. How wonderful of you to be his advocate. Keep us posted on how he is progressing.

Kay

liverpoolgirl's picture
liverpoolgirl
Posts: 44
Joined: Jun 2005

My husband had the chemo/radiation and then the surgery. He has a permanent colostomy as his tumor was very low, as everyone has posted its not as bad as your Father thinks it can be, my husband is very open about it and tells people he has just had his plumbing re-done, and also no one can call him and *******..... as he does not have one. The main thing is that your Father fights this beast with all that he has. Keep us posted on his progress
Debbie
aka "The English Chick"

jenniferllewis
Posts: 5
Joined: Aug 2005

Thank you for the support. I can't believe I had already 11 messages from people about this. How wonderful to have people to talk to in this hard time in our lives. I responded to you because your husbands personality sounds like my dad. He had been joking about it never having to sit on the toilet again, but now has stopped joking about it and does not want to go through it. He remembers his mom, my grandma going through this and she had one, that was about 26 years ago. He's determined to not need one, meaning he wants to kill this beast instead of the colostomy. I know he will have one if he wants to live, but I just need some words of wisdom about it. I would like to know everything about it, the good and bad things about having one. Did he ever get infections? etc. Thank you so much for responding to me. I really appreciate it. I do not know anyone who has it.
JL

well's picture
well
Posts: 26
Joined: Apr 2005

A belated hi to you and your dad.

If it would help him to have another ostomate to talk with, I'm here. Mine is an ileostomy, not a colostomy, but most of the issues he's worrying about are probably similar. (Someone who has one would know the difference though, definitely, heh.)

I strongly suspect your dad is wrong, that he would indeed handle it just fine. Sure it's "something else" to learn to cope with, but cancer is certainly full of that. He's facing the radiation and chemotherapy. Your dad may be fearing it because it's an unknown for him so far in life. What's odd is, he may very well know people with an ostomy, and just not realize it. :-)

In any case, if it helps to talk to someone with one, he's free to write privately.

Best of luck in the meantime.

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